[lilibParticipant]

That’s excellent news, ds2021. Now, go and enjoy the rest of 2022! xx

[lilibParticipant]

Thank you for the update. It’s good to know that things have progressed a little for you. Perhaps it will help if you regard the results you already have as reducing the likelihood of Myeloma down to a very small percentage. When you feel particularly anxious, try to focus on all the things that you know have ruled out the likelihood: the blood results, your age and sex, the fact that you had not had lower back pain before this time. (Back pain can be triggered by holding yourself tense due to stress.)

Hoping to hear your good news very soon. Take care, and try to relax. Worrying is not going to have any effect on the test result, so conserve your energy.

[lilibParticipant]

Hi ds,
Hope you are managing to have a reasonable Christmas, despite pain and anxiety. Firstly, I am not an expert, as I have known about Myeloma only since the end of July, when my husband was diagnosed with it. From attending the many meetings we have had with the Consultant, it seems that Myeloma mainly appears in the lower spine, pelvic girdle area because that is where the bone marrow is plentiful. I even think that our Consultant might have said that it does not affect the lower limbs or hands and feet because the bones there are much finer.

The first thing my husband knew about Myeloma was after a bout of persistent back pain, the GP ordered a blood test in which the hospital Haematology Dept detected an abnormality. He had to go to the hospital the next day to have a bone biopsy for them to check what they had detected in the blood, and then an MRI scan to be absolutely sure.

So, I hope that the above will help you to put your worries into perspective. Anxiety and stress are not good for anyone. Look after yourself, and if you do need more help when you’ve got a definite diagnosis, there are lots of people on this forum who are wiser than me, so keep asking the questions.

Lili x

• This reply was modified 2 years, 11 months ago by  lilib.

[lilibParticipant]

Hi Melanie,

I hope that you don’t have to wait long for your OH to have the further tests. This may well be a bone marrow biopsy. That sounds scary, too, but I know from the experience of my husband that it is tolerable. He had no idea that was what they were going to do to him in Haematology – just thought it was taking more blood samples! After having the biopsy, he then walked about 500 yards to where I had parked the car. So although some people say it is painful, it depends on your pain threshhold I suppose.

Once you know for sure what the diagnosis is, it can be terrifying, but there is lots of support available. Initially you will have a named member of the team to answer your queries, and be given information about the induction treatment regime. I was very heartened to meet lots of people who have had MM for almost 20 years, so it is definitely not time to be giving up on your life together. Unfortunately we have to deal with Covid as well, so it can feel like being in extra-long lockdown, but you do get used to it.

I hope that you will get some answers soon.

Best wishes to you and your husband.

Lili

[lilibParticipant]

Hello, Peter,

My husband is the Myeloma patient, now been on the treatment for 5 months. Your post struck me because that is almost exactly what happened to him after three weeks of trouble-free regime. The rash spread very quickly all over his body, and I had no end of problems getting an appointment for someone to see him. Eventually he was told to stop all the medication, and come in for a review. It seems that the culprit was Thalidomide, so that might be the same for you. The good news is that there are different medications that do the same job as Thalidomide. Best wishes for your continuing treatment.

Lili

[lilibParticipant]

I meant ‘cement’, rather than concrete!

[lilibParticipant]

Hi arob – I’m wondering what stage you are at with your Myeloma treatment? My husband was diagnosed in July, and at that point he was unable to walk or drive because of deterioration of the spine. Since then, his Consultant arranged a consultation with an Orthopaedic surgeon because there is a treatment which can be suitable, which involves inserting some kind of ‘concrete’ into the spine, and he has that option in reserve. However, he has also started monthly infusions of Zometa, which also builds up the bone, and after 2 infusions (the third will be today), he is back to short walks (a mile is the longest achieved so far) and driving the car. He is still on induction treatment, so not likely to have SCT until next year.

In summary, I think perhaps you need to ask some questions of your team about ways to improve your mobility. You may possibly not have been given enough information about what is available.

I wish you all the best.

• This reply was modified 3 years ago by  lilib.

[lilibParticipant]

Hi jogj,

I am so sorry to hear that you have to face losing your mum so soon. I cannot imagine what it must be like for you and your family. I don’t have the answers to your questions, but hope that you can spend time with her and that she will continue to be pain free.

If you want to know more about what has happened to the disease to make it ‘the end of her battle’ perhaps you can ask her consultant or Nurse Specialist to explain for you?

I wish you strength in the coming weeks.

Lili

[lilibParticipant]

Hello Jules,
Sorry to hear about your father’s diagnosis. It’s a lot to take in when there are other conditions at play. I can understand why he – and you feel confused. I don’t actually know what VMP is. Does the V part mean ‘Velcade’? My husband has a Velcade injection at the hospital once a week, but the rest of the medication is done at home. I am wondering if perhaps your father regime means that he only actually needs to visit oncology or haematology dept once a week, too?

If you don’t get any answers from the hospital, I would recommend speaking to the Nurse on this website – you can send an email, and perhaps she will be able to tell you more. I’m afraid that I have found that you really need someone to ‘fight your corner’ and advocate for you, as the NHS is not being particularly joined-up at the moment.

As far as when can you expect improvement – well, it depends on the patient. But my husband is on his 15th week of treatment now, and he really started to feel much better around the 10th week I would say.

Hope you get to speak to someone soon. Best wishes for your father, and yourself.

[lilibParticipant]

Wishing you all the best, Dave, and hope that it all goes well. Also wishing for your wife that she has a good list of back-up support. That’s the bit I am most worried about myself, as I have absolutely no medical knowledge whatsoever…

[lilibParticipant]

Thank you, both. I will show this to him, so that he can understand your very clear explanations. Graham – that was particularly useful as my husband had AZ in Feb and April (but I had Pfizer).

[lilibParticipant]

Hello Dave,

I hope that you have managed to get some answers to your questions. It must be a fairly new thing being proposed, as I suspect that they are trying to avoid having clinically vulnerable people spending a couple of weeks in hospital, if at all possible. My husband’s consultant proposed this very option to us this morning, although I gather that in the first instance there will be an appointment to talk it through with the SCT department. He is not quite ready for it at the moment, and we were told the actual treatment (if he decides to go ahead) would be early next year.

We are in a less complicated situation as our children are adults and don’t live near us. It must be very hard for your wife and children, trying to keep everyone safe.

Hope that it all goes to plan.

Lili

[lilibParticipant]

Thanks, Mulberry. I have waited a week to see if anything bad happened, but I am pleased to say that my husband has not reported any side effects from the Zometa. In fact, today, for the first time in nearly 4 months, he has driven the car – and went for a short walk afterwards. This is almost worth a celebration to me!

[lilibParticipant]

Thank you, Rosary. I don’t think he had any say in the timing of the infusion this time, but he’ll certainly try to keep the fluids up. He has also been given more tablets to take (!) This time it’s Vit D, which I suppose is sensible as he is not getting out into sunlight much, as he was told not to.

[lilibParticipant]

Husband says thank you, Robert! Feels that I am worrying more than he is. I like to be prepared for any possible nasty surprises. Believe me, there have been a few.

• This reply was modified 3 years, 2 months ago by  lilib.

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